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About Me

Hi! My name is Qadoshyah and I'm the oldest of 11 kids. I live on a ranch in the beautiful country of Northeastern Oklahoma with my family. We are a large household with so many kids that we have various projects going on: We raise goats, pigs, sheep, and rabbits (I raise the rabbits - cute little mini lops) on our 44 acre ranch. Our ranch is also home to bullmastiffs, chickens, guinea hens, ducks, llamas, a donkey, a bottle calf, and several ranch dogs and livestock guardian dogs. The youngest two kids are boy/girl twins born in Feb. '05. The boy happens to have Down syndrome. He is such a blessing to our family :)! Our whole family is also gluten-free, which adds another interesting aspect to our large, active family. We also cook dairy-free & corn-free due to allergies a few kids have. Some of the family is also on the GAPS diet to restore gut health.

Disclaimer

The writers of this blog research and attempt to give what they believe is the most accurate and up-to-date information. Nonetheless, the information on this blog is simply opinions and does not in any way constitute professional legal or medical advice. Also, references or links to external, or third party websites, are provided solely for visitors' convenience and are not controlled nor monitered by us. Links taken to other sites are done so at your own risk.

Moreover, this blog and it's writers do not endorse or support religious views that are not consistent with the Bible. The only faith we have found that is faithful to Scripture can be found at www.atruechurch.info.

Wednesday, March 27, 2013

Richard on the DSTNI list just pointed out a dosage mistake in my post, due to VitaCost's GreenSelect misinformation on their dosage. I updated the original post about EGCG to reflect the following dosage information.

Originally we were going to use the VitaCost brand. But, Richard on the DSTNI list pointed out that VitaCost doesn't calculate the dosage accurately. Yes, it can be a little confusing. But, they miss the dosage part of the fatty acids in the mix. So, the dosage above for Swanson's GreenSelect is accurate and not as confusing. The VitaCost dosage is not accurate.

For a child that is O’s weight – 50 lbs – that would calculate out to 180mg/day of EGCG. With the Swanson GreenSelect EGCG, that would mean approximately 2 & 1/2 capsules. With the VitaCost brand, the dosage is almost doubled.

Near-normal brain function can be restored in mouse models by increasing levels of this protein, called SNX27

One of the researchers says,

"It's hard to say in humans (how much brain function can be repaired), but in those particular mice, the mouse model of Down syndrome, we were able to pretty much rescue all the pathology," according to cognitive tests given to the rodents, Xu said.

The research showed the following,

Lack of SNX27 decreases the number of certain molecules on the surface of mouse neurons, the study found. These molecules, called glutamate receptors, are important for learning. Researchers studied brain samples collected after death from people with Down syndrome, and found lower levels of SNX27 than in control samples of those without the condition. In addition, neurons have abnormal dendrites, the long filaments that help transmit signals from cell to cell.

If the mouse model is a good guide, such therapy should work in children almost up until puberty.

The mice were treated using gene therapy.

The mice were treated with gene therapy to deliver a human version of the gene that makes the SNX27 protein. A common virus was given the gene, then delivered to the mouse brains. Such an approach is now considered too risky for human use, Xu said, so researchers are looking for a drug that produces the same effect.

The beginning of the article linked above states,

Moreover, the study points the way to a possible therapy to improve brain function in children with the genetic abnormality. No such therapy now exists.

I would have to disagree with this. There is nutritional therapy that exists right now which improves brain function in children with Down syndrome. Namely Longvida Curcumin, Ginkgo Biloba and EGCG. Some families even use Prozac with their children with Down syndrome to improve brain function.

It would be nice if Down syndrome was easily "solved" with just one therapy. But, it's not. It's so complex, due to the triplicated chromosome, that so many different genes are "turned on," "turned off," underexpressed, overexpressed and so on. While I am excited for every new research find and every new possible therapy to help individuals with DS, it's a complicated puzzle. Ultimately, at this point, we have to use as many researched aspects of treatment as are available to us (which are safe), to address the concerns in Down syndrome. It's an every changing journey though and something that has to be looked at as a marathon, not a sprint.

Sunday, March 24, 2013

EGCG, which stands for Epigallocatechin-3-gallate, is an extract from Green Tea. EGCG is the major polyphenolic compound found in green tea. Green Tea has been known to have lots of health benefits for awhile, but about two years ago it came to the attention of people in the Down syndrome world.

I’ve been watching it over the last couple years. But, when I saw some new research come out about EGCG a couple weeks ago, I decided it was time to jump on the bandwagon and start supplementing with EGCG. As usual though, I needed to have all my ducks in a row, so to speak, have all the research and facts lined up, so I can definitively know why we are using EGCG. Of course, this helps others as well, which is also why I’ve typed it all up.

Original research with EGCG that sparked the attention of those in the DS world was research for Alzheimer’s disease. Let’s look at some of this initial research to lay the groundwork.

EGCG prevents certain apoptotic (pre-programmed) cell death through inhibiting the elevation of Abeta (a protein involved with Alzheimer’s and also involved with DS) via inhibition of beta and gamma-secretases. This, therefore, reduces neuroinflammation that’s associated with the progression of Alzheimer’s disease (1). We also know that neuroinflammation is involved with DS.

Alzheimer’s Disease & Down syndrome have the increased amyloid-beta protein (Abeta), which causes plaques & tangles in the brain. The processes & increases which Abeta cause are reduced by EGCG. EGCG improves memory function, as well as reducing harmful levels of increased Abeta and its associated functions (2).

So, we have EGCG which prevents cell death, reduces the elevated levels of amyloid beta, reduces Beta Secretase expression, reduces APP (Amyloid Precursor Protein – overexpressed in DS) and reduces neuroinflammation. All of this will help improve neurogenesis. That’s all great stuff, but there’s still more amazing benefits to EGCG – specifically for Down syndrome.

There’s an annoying little gene that is over expressed in Down syndrome called – get ready for this long word - dual-specificity tyrosine-(Y)-phosphorylation regulated kinase 1A, also known as DYRK1A. We’ll use the abbreviated word, since it’s a lot easier to say and remember! DYRK1A causes cognitive & learning impairments in DS and is highly involved in the neurodegenerative process in the Down syndrome brain (3-6). It also plays a role in the Alzheimer-like pathway that is seen in Down syndrome (3).
The good thing about DYRK1A is research has shown that it can be inhibited. If DYRK1A is inhibited, then the harmful effects of the gene won’t be able to function. Remember, the over expressed aspect of this gene is what is the problem – not just the gene in and of itself.

EGCG is a safe DYRK1A inhibitor and there has been very successful research done in individuals with Down syndrome. The Jerome Lejeune Foundation has a program designed to research what will inhibit this gene. Professor Mara Dierssen, from the Jerome Lejeune Foundation, has had a very successful clinical trial (10) with individuals with Down syndrome using EGCG. Professor Dierssen is also now recruiting for a second clinical trial (11).

EGCG is also a GABA antagonist (7-9). An antagonist is a substance that acts within the body to reduce the physiological activity of another substance. Gamma-aminobutyric acid (GABA) is an inhibitory neurotransmitter.

Now that we have the definitions down, let’s get on to the problem with GABA. GABA is a good thing when it is not in excess, because it creates the perfect balance between neuronal excitation and inhibition to allow for efficient learning. But, there appears to be too much GABA-related inhibition in Down syndrome and therefore it “turns off” too many neurons in the brain and makes it more difficult to process information.

So, EGCG being a GABA antagonist, namely blocking the GABA(A) receptor (recombinant alpha1beta2gamma2L GABA(A) receptor), is a very beneficial thing for individuals with DS. Having an antagonist which can reduce GABA, will greatly help the brain and learning in Down syndrome.

Mitochondrial dysfunction has been well established in Down syndrome. EGCG prevents oxidative deficit in the mitochondria, reduces oxidative stress and actually promotes mitochondrial biogenesis in Down syndrome (12). This is amazing, because there has never before, to my knowledge, been a way to efficiently combat the mitochondrial dysfunction in Down syndrome.

EGCG is also an iron-chelator, which can be beneficial for individuals with DS, due to the oxidation issues that come with high levels of iron. Now, if an individual with DS already has low levels of iron, this would be something to keep in mind and monitor the iron levels while supplementing with EGCG.
So, to recap, EGCG helps improve memory, reduce the learning impairment seen in individuals with DS, reduce oxidative stress, is a potent antioxidant, promotes mitochondrial biogenesis, is a GABA antagonist, is an iron-chelator, inhibit DYRK1A, prevents cell death, reduces neuroinflammation, reduces Beta Secretase & APP expression, and causes a reduction in Abeta and the problems it causes.

With all this, one may ask, is there anything negative about EGCG? There is one thing to keep an eye on, but I wouldn’t necessarily call it a “negative.”

EGCG inhibits or reduces DHFR, which is an enzyme involved in the methylation and folate cycle. So, ultimately, it may reduce folate. We already know that folate is reduced in Down syndrome and many people use additional supplements to increase folate in Down syndrome. As long as a sufficient amount of folate or folinic acid is supplemented, I would not be too concerned about this aspect of EGCG. There are some other questions regarding DHFR and some genes that it is involved in regulating – whether it is good to stop that or not.

But, for now, look at all the benefits for EGCG above and think about all the problems which DYRK1A (and others) cause. The answer is simple for me, at the moment: Supplement with additional folate/folinic acid, or supplements to support the methylation cycle, as you are using EGCG.

Now, the question comes down to, what is the recommended dosage and what are the best brands.

The recommended dosage is 9mg/kg (kg=2.5lbs) of EGCG. This is the dosage that the clinical trials in Down syndrome are using. This is also the dosage that many parents are using with their children.

One important note on the dosage: that is NOT 9mg/kg of Green Tea. This is important to note, as most products will be Green Tea that you are giving. You will have to calculate the amount of EGCG in the product to give the correct amount. You will be giving more Green Tea, but the recommended dosage of 9mg/kg.

Because EGCG is still in the early stages of use and development, it can be a little tricky to get a brand that is bioavailable. A good brand of just EGCG is Teavigo. The problem with Teavigo is that it is not in a liposomal encapsulation (a fatty acid), to make it bioavailable enough to cross the blood-brain-barrier (which is where it is needed).

Originally we were going to use the VitaCost brand. But, Richard on the DSTNI list pointed out that VitaCost doesn't calculate the dosage accurately. Yes, it can be a little confusing. But, they miss the dosage part of the fatty acids in the mix. So, the dosage above for Swanson's GreenSelect is accurate and not as confusing. The VitaCost dosage is not accurate.

For a child that is O’s weight – 50 lbs – that would calculate out to 180mg/day of EGCG. With the Swanson GreenSelect EGCG, that would mean approximately 2 & 1/2 capsules. With the VitaCost brand, the dosage is almost doubled.

So, there’s a LONG explanation of why EGCG is good and everything that goes with it. I will keep notes of how O does on the EGCG and any changes we see.

*Note (Update 8/20/15): I realized that it is not mentioned about giving the child the 9mg/kg dosage of EGCG twice a day. That IS the recommended thing to do. It is best to give the 9mg/kg dosage TWICE a day, as then it is in child's body at all times. We do this with O. Some have had problems giving the dosage at night, because it has kept their child awake. Others have not had this problem. We have not experienced this problem at all.

Monday, March 18, 2013

Last week I received an email from a new mother of a baby with DS who recently came across my blog. She was furious that the term "mentally retarded" had been used in this blog. She even went so far as to say, "...you use the term mentally RETARDED!!!??? Really there's no other word besides retarded that you can use!!!!!????? So fricking ignorant of you people. OUR children are not retarded..."

In my response to her, I said I was sorry that she was offended. I asked her to point out the articles on our site which refer to individuals with
DS in a derogatory way with the term "mentally retarded", so I could change it.

But, I searched my blog and only found this term used in
medical literature that is being discussed in posts on the blog. And also in one
post where I discuss the concern over the use of the word "retard." I told her I don't believe my brother with DS is stupid, so she must've completely
misunderstood and misread my blog.

The term "mentally retarded" is what is
commonly used in medical literature as they are researching ways to help
individuals with Down syndrome. To have them disregard this term, would be
completely ridiculous. All this term means is that there is "mental
slowness." The word "retard" means "slow." Is there something
wrong with an individual being slow? Is there something wrong with an
individual having "mental slowness"? I don't believe there is,
therefore this word does not offend me, because it is the medical way to
describe one of the conditions that Trisomy 21 causes.

Is there something to try to run from because your child is "mentally retarded"? In reading medical literature, you will run across the word "mentally retarded." I don't try to hide from this word, because my brother has Down syndrome. Let's face reality. He learns slower. He does some things slower. Big deal!

There has been a movement, at least in the past, to try to ban the words "mentally retarded", "mental retardation", "retarded", etc from being used in medical literature. To ban these words is crazy, in my opinion, because these are words to describe a symptom. All sorts of conditions & genetic abnormalities have used these words at various times to describe something. This term is used even outside of the medical world to describe various ways things work.

It seems to me that so many people are offended over this word where it is used because they don't want to face reality. Reality is that individuals with Down syndrome function a little slower than an individual without Down syndrome. Our society has made it such a bad thing and something that nobody wants. So, when a person is faced with the reality that they may have a child now that is going to do things at a slower pace, they try to push every aspect that may hint towards that off.

But, really, it's not that big of a deal to have a child do things at a slower pace, or to learn things slower. I accept what God has given us and am thankful for it. The genetic anomalies that happen due to the third copy of Chromosome 21 in Down syndrome are not always pretty and those aspects I'd like to stop, or slow down. So, I do what I know is good and what I can to help stop those processes or to at least slow them down.

Really, I'm thankful I have a brother who takes life a little slower. It's good for us :).

Wednesday, March 13, 2013

O has a little bunny who is named "Leo." It was supposed to be a "she" and was named "Lily", but that changed, so HE is now named "Leo." Leo was also supposed to be a French Lop, but he turned out to be a French Lop cross (I think crossed with a breed called the Rhinelander). He's only 4 months old and already a big guy!

I had updated about John Marrs last year here. Below is Jenny's newest update:

John is a senior now.
He just took part in the National Honor Society inducting the juniors. He will
get to wear his honors sash one last time when he graduates in May. He
took Geometry this year. I was worried a little about that, but he has done
himself proud. I talked with his teacher recently because they were going to do
a unit on trigonometry. His teacher said that he hadn't had to modify anything
for him all year, and he was wracking his brain trying to figure out how to get
through trig, which he thought would be hard. John came home one day with a few
problems done. I asked him how he did them, and he actually taught me how. He
sailed through the unit....

Monday, March 4, 2013

If you haven't watched this video about an Albuquerque, New Mexico restaurant called Tim's Place, you've got to watch it.

Tim is the owner of the restaurant and he just happens to have Down syndrome. He dances into work every morning, and gives everyone a hug when they come to his restaurant. He said he had always dreamed of owning a restaurant when he was a kid, and once he became an adult, his parents helped him fulfill that dream.

Their slogan is "Breakfast, Lunch & Hugs." Tim says the best part about it is giving people hugs, because "food is just food."